Saturday, 03 March 2012
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"Oh he just has Aspergers? He'll be fine in the long run, right?"
We had some new friends and their two young kids over this past week, both parents teach at the University where The Professor works . We don’t know them that well yet, but I do adore the wife and we have been hoping to get to know them better.They are aware we have an autistic son as it, of course, figures heavily into the planning of said get together, but we have never really spoken more about it.
During the course of dinner conversation I referred to Charlie and his Aspergers. It’s what is officially written on his diagnosis papers and I tend to use the terms Aspergers and autism interchangeably as the mood fits when referring to my son.
Oh, Aspergers! the wife said, O that’s not such a big deal is it? I thought he was autistic. He should be fine in the long run, right?
In that moment I could see on her face how radically her view of him changed. Charlie was sitting on the floor ignoring all the other kids in the room while he ripped up a piece of paper into tiny shredded bits. Yet, I could see in her face how he went from being a pitiable, limited child to a merely socially awkward, misunderstood savant. All the while he just sat there ripping up his paper.
I’ll admit this ignorance generally kind of irks me, though i probably thought much the same thing a few short years ago. Now these are the moments for raising awareness and educating and I did just that. I spoke of Charlie’s challenges and of the challenges high functioning autism can still present, as I have been blessed to be given glimpses of them by bloggers like this and this and this. But, the truth is, I don’t know what the future holds for him or what the predictors of being fine in the long run are.
*
Last week at the zoo, Charlie started lecturing the little boy who stood next to him at the bird habitat about all the ways we know birds are descended from dinosaurs. The boy finally turned to him and said, Can you stop talking now?
That is the kind of kid people expect when they hear Aspergers and I do have that kid. I’ve got dozens more stories like that about Charlie. They are both sweet and heart-wrenching glimpses of a child who will have a little harder time making his way in the world, but, as my friend said, in the long run he’ll be fine.
But, I’m left then to wonder about the other stories, the daily occurrences. What about the Charlie who this morning quietly pulled all the clothes off hangers and out of drawers in his closet, threw them on the floor, and then doused them in baby oil and hand lotion because he thought it might be fun? What about the Charlie who this afternoon ran barefoot six blocks down the street before I could catch him because I told him he couldn’t go to the store with his dad and brother? What about the Charlie who got up in the night last night, took my wallet out of my purse, and hid my money and credit cards all over the house?
Is that Charlie going to be just fine in the long run? Is that Charlie going to find his way in the world independently? Is that Charlie just socially awkward and misunderstood?
I hear it everywhere I turn. Not just from ignorant, well meaning friends, it comes from the professionals in our lives too. He’s smart, he’ll be fine. He’s smart, he’ll outgrow it. He’s smart, he’ll be able to learn all the social skills he’ll need.
I want to believe these things. I want to believe that somewhere in that beautiful brain of his are the keys to unlock the ways to be in the world, even if it’s just staying on the edge of it. I want to believe intelligence is all that’s needed to conquer that mountain he has to climb everyday just to survive in this world.
But, days like this, I admit, I feel lapses in my hope. I just don’t know where my son falls in my friend’s visions between the limited child and the socially awkward savant.
*
After six blocks of running from me today Charlie simply stopped, turned around, and waited for me. When I reached him, I collapsed to the ground and he curled up in my lap and let me hold him.
I was afraid for you. I was so afraid for you, my love, was all I could manage between my tears.
After a bit he finally looked up at me and said, There’s a storm coming, mommy we have to get home now.
He held my hand as we walked the six blocks home, past all the staring neighbors.
I’m going to turn my day around now Mommy, he said to me as we walked.
And he did turn his day around.
Tonight as I am up still laundering 2 baskets of clothes covered in lotion and baby oil, I think I just want someone to tell me that means he’ll be just fine in the end.
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Comments (17)
"But, I’m left then to wonder about the other stories, the daily occurrences. What about the Charlie who this morning quietly pulled all the clothes off hangers and out of drawers in his closet, threw them on the floor, and then doused them in baby oil and hand lotion because he thought it might be fun? What about the Charlie who this afternoon ran barefoot six blocks down the street before I could catch him because I told him he couldn’t go to the store with his dad and brother? What about the Charlie who got up in the night last night, took my wallet out of my purse, and hid my money and credit cards all over the house?"
Guess what!? "Normal" kids do these things. These are the kind of things you should be thankful for. LOL They are typical childhood mischief. I can't think of a single parent I know who doesn't have some stories like this. Some more than others... and it seems that the brighter the kid, the more the mischief. Curiously exploring the world and seeking experiences is a good thing. It's frustrating to have to clean up the mess it makes, yes... but these are the kind of things that let you know that YES, HE WILL make his way in the world. You just have to work with him to understand some of the need for impulse control and the necessity for considering the possible consequences of actions before they are taken.
I've noticed that a lot of AS kids (myself included) don't quite have the forethought to process an "IF/THEN" scenario without actually seeing it happen. Personally, I learned to do this by learning the BASIC programming language for a computer. My dad started teaching it to me when I was six. In order to write a program in BASIC, you pretty much have to think it through all the way to the end, and THEN write it one line at a time. (Yes, BASIC is antiquated now and useless as an actual programming language... but that's beside the point.)
That being said... there's a lot you can do to channel that into constructive endeavors. Give him lots of experience to play "connect the dots" with. Set up the "IF/THEN" scenarios and work them out. You might end up with a few less baby oil covered clothes. :)
He will be!! If Anything, he will be a stronger person! I met my roommate in college and she has aspergers. She is one of the strongest person I have ever met. She has gone through so much and told that she wouldnt be able to do things such as talk or be normal or ever go to college. But she did. She has done all that and succeeded! She is graduating this year and I am so proud of her.
I know you may have wanted a "normal" child but I feel you have a great gift. Your son will show the world another perspective that is needed in this world. I love my roommate for all she is. For all the quirky things she says and all the passion she has for her current interests. The world needs more people like her.
He will be more than fine. As long as you kindle a strong desire to succeed, he will be able to share his gift with the world!
Read books like "The Curious Incident of the Dog in the Night-Time" && about Dr. Temple Grandin. Excellent sources.
@brokensilence04@xanga - "The world needs more people like her" ... BrokenSilence, the world needs more people like you as well! :)
My experience is limited, having a few friends growing up, as well as others I know from college. Your child, as others have said, acts pretty much like other children right now. I wouldn't say he's unruly, just eccentric. When he matures, he'll be able to socialize with accepting friends, and he will definitely be accepted. Whether or not he even tells people if he has Aspergers, people can be patient, or people can be rude. They "blend" in with society because they're apart of it. Not every child is the same, but even in college, they can be some of the happiest people. Judging from this post, he's already quite the intelligent person.
There've only been a few people I knew who were autistic, and they're high functioning. They got easily upset, but I feel that's partly from other "friends" being jerks.
I just wanted to say that I understand what you are feeling. My little daughter, (who's waiting for assessment- we're in Canada and the wait list is long) is making great progress with the intensive therapy that we are providing for her. BUT- the times like what you've described make me wonder about the future too. I'm trying to cultivate a one-day-at-a-time attitude, but it is HARD. My favorite new quote, by Don Ward is "If you are going to doubt something, doubt your limits." I wish I didn't waver in my ability to truly do this. :)
Anyway, I guess I'm just trying to say you're not alone.
My younger brother has was diagnosed withAspergerswhen he was young. Maybe he only had a mild case, but the worst that ever happened was he was partial to a specific stool at the table for dinner. He'll graduate high school this summer with a 3.9 GPA and a 30 on his ACT. He's already been accepted to his chosen college with a few scholarships. He wants to be a city planner.
I know that Down-Syndrome and Autism are extremely, extremely different. Like, they really aren't even comparable. But, a lot of those things sound like things my brother with Down-Syndrome would do when he was younger. I can't remember everything as well, since I am two years younger than him, but it was pretty bad. He ran away and would hide all the time, anywhere we went. He ran away and hid while we were visiting an orphanage, he'd sneak out of our house and go into a neighbor's house and hide in their closet. If a babysitter and I went outside, he'd lock us out. One time he threw detergent into a babysitter's eyes. He would flush everything and anything down the toilet. And now, at 24, he is the SWEETEST person that I know. He is completely laid back. He is very thoughtful and independent. He's able to read and write, cook his own meals, do his laundry and other things around the house. He is not nearly as high functioning as your son will be, but my parents don't mind that he will live with them for the rest of their lives. He is no longer a burden to our family, but instead a complete joy. He grew out of that stage pretty early on. So, I really believe that this could just be a stage for your son as well. He seems to be very intelligent and understands that what he is doing is wrong. I don't think my brother really understood why he was doing what he was doing and I don't think that he really understood that it affected other people.
@doublecurious@xanga - That's interesting. I used to nanny a kid with asperger's and he was obsessed with cities. He knew where every city was in relation to his. He paid attention to every street name he saw and would write them down in his journal. Most of his games involved direction/cities/streets. I bet he'd love to have the same job as your brother.
I don't have very much experience with either aspergers or autism, except what I saw when I was doing observations for my early childhood ed degree. (and that wasn't much) But I can tell you that all young children will do things like that. My daughter is 3 and she and my son (23 mo) decided it was a good idea to puff the baby powder into the air like snow. (I was in the bathroom at this point, she ran in to tell me what she was doing, and I had no way to stop her. lol) They just wanted to see what it would look like. My brother and cousin once decided to make an indoor slip-in-slide by dumping all the shampoo and conditioner onto the floor.
While some of the behaviors are going to be tiring and make you crazy now, you'll be able to look back and laugh on them later on. My brother is 20 now and we still like to laugh about the shampoo story at family gatherings.
My 17 year old brother was just "diagnosed" as being on the social end of the autism spectrum. Likely Aspergers, but since it was done through the school they said they could not actually give the term "Aspergers." My parents won't be taking him in to get the "label" because they don't feel it will change things. Most people are wondering why he was diagnosed so late, and the reason is that 1) he has been diagnosed and on medication for ADHD and OCD since he was really young and the medication might have "masked" some of the symptoms; it wasn't until he started hitting puberty that behaviors that we just thought were "quirky" and he would grow out of became escalated and inappropriate for his age. And 2) my parents had him on a waiting list to be assessed for quite some time after several people (family, friends, mental health professionals) suggested that he might be autistic.
That being said, he does not have many friends and has had to take extra measures in high school (like extra tutoring, etc. when his grades started falling - not in the least bit due to a lack of intelligence,) that even some "normal" kids have to take. He gets picked on for some of his weird behavior, but honestly, it doesn't bother him as much as you would think it would. He's actually quite confident in himself (honestly, he handles it better than I ever did.) His grades are finally becoming more reflective of his intelligence and he has big future plans for himself, and I honestly think he'll achieve them. I think in the long run he'll be better off because he might have to work a little harder at it than most people. A majority of people like him once they get to know him, but many don't understand him and won't take the time to get to know him. Also, my husband has an associate that has Asperger's. There are days where he might have to work a little extra with him, and he often has to repeat himself, but otherwise he is a good worker. So I know in the end they will all be "fine." Many "normal" people have hurdles (personality flaws, behaviors, etc.) they have to overcome, so Asperger's have the same thing, and I believe they CAN do it, they just might have a little bit more difficulty doing so. But I have no doubts they can live long, fulfilling lives. I know some days are more frustrating than others. There are days where my brother seems to be perfectly fine, then other days his behavior is so bad it's upsetting. Now that they know how to approach things, he is getting social therapy and already seems to be improving. It's slow moving, but any improvement is better than nothing. As a mother myself, I think this just comes with the territory. Every day we face challenges with our children and have to figure out a way to overcome them. Sometimes it's overwhelming and we think we couldn't possibly be doing it right or continue to go on, but we make it through and then see what great joy and fulfillment we get out of our children in the end. I'm sure you're doing a great job and your son will turn out to be a wonderful individual.
I want to print this out and show it to EVERYONE.
If it'll help in anyway to hear from very personal experience, I was diagnosed with borderline Asperger's as a little kid. Some behaviors I just outgrew, while I had to learn typical social behaviors. My mom, for example, would have to write out what I would say when I called someone and if I had to leave a message on their answering machine.
But thankfully, because of all the help and support I got growing up, I can now live a normal, functioning life, and pretty much no one outside of my family and a few close friends know about that... well, except now also for whoever's reading this.
I'm sure my parents pulled their hair out all the time, struggling to put up with me as a kid, but it was worth it in the long run. To say the least, I can now have a normal conversation with someone. :)
I have AS, and I'm sure my parents hated me sometimes, but I turned out pretty normal. He's gonna wind up fine, a little awkward socially maybe, but he'll be just fine. Like me and the thousands of other AS-people.
Asperger's should not be called "autism" and it never should have been interchangable. There are people out there with autism that will need full time care for the rest of their lives because of it. Most people with Asperger's will not.
He will be fine. You're right, it's important and sometimes very hard to believe that. But, he will be. In his own way, which you can't know everything about yet. But you can't know everything about how a typical kid will develop either. And sometimes, mischief is a good sign. He's interacting with his environment. He's reacting to what you say. That's not to say that it's easy to deal with! Congratulations on your smart little boy and your great parenting skills.